LIVE Q & A Transcript with Co-Founder Suzanne Wright

Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.

Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.

In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.

Hi Suzanne, I have a brother with Autism and just want to say thank you for your time you put into Autism Speaks.

1:04

Hi Emily. Thanks for your kind words – I do this for Christian and for all families and individuals affected by autism. Thanks for joining our discussion today.

1:06

Comment From Lalania Lind

I have a question. Did your family find it hard to get help from the education system for Christian?

1:09

Hi Lalania – very much so. Here is a guide that we provide from autism speaks – a School Community Tool Kit which can give you some advice – and an our IEP – Individual Education Program toolguide – which provides process and practical tips to knowing your child’s rights.

Hello Suzanne! Thank you for coming on to talk with us grandparents today. I was wondering what activities you like to do with Christian.

1:11

Hi Carol! We love to swim with Christian… he loves to go to the playground, he loves to go to the beach and swim in the waves, and he just made a beautiful little necklace for me so we’re starting on some arts and crafts these days.

1:11

Comment From Melissa

My son’s grandmother is a great advocate for our son. He’s now 8 and enrolled in a private Christian school here in Atlanta after spending 3 years in an intensive program at Emory University. I could talk to you all day about all the things she’s done for him and for us. Thank you to Autism Speaks for first jumpstarting our family into seeking treatment for our son back in 2005.

1:13

Melissa, hi. You have a wonderful mom. Speaking as a mom I knew from the get go just how important it was to be there not only for my grandson, but for his parents as well. We are glad that Autism Speaks was able to help your family at a very sensitive and critical time.

1:13

Comment From Sally

How do I share my time with my other grandchildren?

1:15

Hi Sally. This is VERY important. Not only for the sibling of the child affected but for the little cousins too. We as a family take turns with Christian when we are all together so I can spend some time with his brother and cousins. I must say that they are beginning to understand what autism is, and I do spend time trying to explain why special needs.

1:15

Comment From Annie

This Halloween we will trick or treat for Autism Speaks and ask for donations in lieu of candy! My 3 yr old son, Jamey doesn’t like candy, but he is autistic and that’s how I came up with this idea.

1:16

Hi Annie – We LOVE your idea and we’ll be posting it on our website!! I love the fact that you found a way to celebrate Halloween in your own special way.

1:16

Comment From patricia chabra

I am PAtricia Chabra,I have two son with ASD disorder,I have been doing autism walk for years,advocating for children and adults affected,you are such a mentor and inspirational person suzanne,god bless you

1:17

Hi Patricia – even though it’s not possible for me to be at every walk I am always there in spirit. I’m glad to be connecting with you now here – thank you for all your kind words and God Bless you too.

1:19

Comment From Donna McCombs

First, Thank you for giving your time to us for this chat. How can I teach my daughter’s grandparents to be more understanding about her disorder?

1:21

Hi Donna – our new Grandparent Tool Kit addresses this very issue. It will absolutely give you pointers on how to interact with the other set of grandparents who may be as supportive as your own parents. I really hope this helps – I know how difficult it is.

I have a grandson named Jaylin and we have been trying to find him weighted blanket he gets to hot if we put the ones he want but wont sleep without them so we was told about the blanket just cant find them.

hi Suzanne!:) im mark from the philippines. i’m glad about organizations such as Autism Speaks and really appreciate the facebook account. I have a brother with autism; just wondering, Whats the latest research in autism, such as its cause or new teaching methods given to autistic children?

1:24

Hi Mark! I’ll give you a link to our science which contains the most up to date and cutting edge science news. On another note we have our Light It Up Blue campaign which runs worldwide during the month of April. Can you help me light up some buildings in the Philippines blue?? We want to light up the world!

Hi Suzanne and other parents/grandparents! LOVE Autism Speaks and the Light it up Blue campaign. One thing I’d love to see is resources and ideas for grandparents for toys/gifts. My son is 9 and there are tons of “autism toy” ideas for younger kids, but I would love to find more ideas for older kids. When it comes to birthday time, Grant’s grandparents are always at a loss (and sometimes I am too!). :)

1:26

Hi Melanie! First, thanks for helping us to Light It Up Blue! We actually have a Toys R Us online guide which was specifically created for differently-abled kids.

It was actually the Autism Speaks series on NBC back in February 2005 that made us realize what we had been dealing with for 18 months despite protests from our pediatrician to the contrary. Our son was then diagnosed with classic autism that April. He’s now mainstreamed with no educational supports, is on the A honor roll, and has become a bit of a musical prodigy much to our delight. We just recently told him about his autism and he’s still wrapping his head around it. We are finding his classmates are beginning to notice his social and behavioral differences and wondered if AS had any suggestions on how to explain what autism is to young non-sibling children.

1:30

Hi Melissa – great question. There’s portion of our School Community Tool Kit devoted to peers. I’m so happy that you were able to see our Autism Speaks series on NBC. In Feb. 2005 no one was talking about autism – now we have our country but the world talking about it. If you are not familiar with our Light it Up Blue campaign I’d love to have your help to shine a light on autism.

It’s so important that the AARP join Autism Speaks – because autism affects everyone – the child, the parents, the siblings, the friends, the teachers, and the Grandparents – who often become the child’s emotional rock.

1:43

Comment From Lania

But how do you get a grandparent to come out of denial? We have been trying for years to help our daughters grandparent that she has autism, but she just will not believe us or the doctors.

Hi Lania – you know, everyone deals with the diagnosis differently, and I certainly feel for your situation. We have a 100 Day Kit which helps families through the newly diagnosed period. As part of the 100 Day Kit – we have a “Learn the Signs” section describes the hallmark signs of autism in detail. So maybe presenting this information to your daughter’s grandparent will help them understand the diagnosis of autism better.

1:46

Comment From Donna McCombs

Our grandparents on both sides say that if she had more discipline she would not have any behavior issues.

1:46

Donna – the misconception is that aspects of autism is about lack of discipline. This is not the case. Please go to our Learn the Signs and our Grandparent tool kit – I really hope this helps.

It has been such a wonderful experience chatting with so many of you today. I really hope that our Autism Speaks website offers you the resources that you need as you navigate through the complexity of living with autism. Know that we are here for you and appreciate all your support. The more people who know about autism will be more willing to help ALL families everywhere. And we can raise the global consciousness by lighting up the world blue in April. Thank for the opportunity to chat with all of you today. Happy Autumn Day. Suzanne Wright

HI I am Norman Christian Diaz, a registered Nurse here in the Philippines, I’m currently working in Autism Hearts Philippines Inc. as a program project officer, and I actually do integrated art and music therapy session. I have some medical backgrounds with regards to Autism but I think it is not enough to fully understand kids with ASD. As a nurse my approach during therapy session are very medical I’m not sure if my techniques are effective or working, but little by little I see some improvements to some kids, but there are also other kids which are very difficult to handle, sometimes it will get me frustrated because they are not improving, Please if you could give me advice or share some techniques for me to improve and better understand them thank you very much.

Suzanne- I recently (months ago) requested some assistance from Autism Speaks. My husband and I run a horseback riding program for childrend with Autism and have funded it 100% since it’s inception. We use volunteers and our wallets. Why oh why, can’t this huge organization share some of the millions with those who have grassroots programs going? It discouraged me greaty to be rejected out of hand. Please visit http://www.freedmrides.net and make your own decision and comment. I would be most intetested in knowing if you feel the same way. While we don’t have a child with Autism we do have a friend that has an Aspy child. We are doing it on the ground and each time I see the millions raised, I am now beginning to wonder where all those funds are going. Please visit the website, see the faces of these kids and give this strong consideration.
My thanks in advance,
Peggy Freeman
Founder,
FreedomRides
:One Smile at a Time”